Parkinson's patients are fighting back against the disease, literally

BRUNSWICK, Maine — It’s a cruel irony that John Moulton, a 65-year-old massage therapist from Harpswell, received a diagnosis of Parkinson’s disease last fall, just as he was preparing for an active retirement. For a guy who built a hands-on career helping people cope with pain, stiffness and impaired mobility, the diagnosis is particularly galling.

“I’ve always been really active and this is so limiting,” he said, his speech already muted and slowed by the effects of the progressive neurological disease. His balance and agility have also been affected, a real problem when it comes to his passion for sailing.

“I used to have really good balance, but now I look like a drunk walking,” he said, shaking his head with a rueful smile. Moulton had been experiencing symptoms for a couple of years, but delayed seeing a physician until he was enrolled in Medicare, since the private insurance he purchased came with a $15,000 annual deductible.

But Moulton isn’t taking this diagnosis lying down. Instead, he and his wife, Sally, have ramped up their physical activity with daily walks, vigorous outside chores and other exercise. And twice a week, they suit up and show up at the Landing Y in Brunswick for Rock Steady Boxing, a punishing, 90-minute workout built around a routine of boxing moves.

“The biggest thing is, if you don’t use it, you’ll lose it,” Moulton said. He hopes his participation in Rock Steady will help delay the inevitable worsening of his symptoms. Already, he sees some improvement.

“I can brush my hair with my right hand now,” he said. “Before, I couldn’t even lift it over my head.”

Rock Steady Boxing was developed in Indiana in 2006 with a special focus on helping people fight back against the debilitating effects of Parkinson’s disease. The nonprofit organization now boasts more than 280 program sites in 44 states. The program in Brunswick, a partnership between Mid Coast Hospital and the Landing Y, is currently the only site in Maine, and has been in operation for about three months.

“With Parkinson’s, taking a thought and connecting it to a movement is the challenge,” he continued. “It takes balance, timing and coordination. Boxing moves require you to connect your mind to the movements of your feet and hands and to be fully aware of your body.”

‘Forced exercise’ may help delay changes

Parkinson’s disease affects approximately one million Americans, with about 60,000 new diagnoses a year, according to the Parkinson’s Disease Foundation. It is characterized by the progressive loss of mobility, balance, speech and sensory functions. It is more common in men than in women and more likely to appear after the age of 50. The causes are poorly understood, but Parkinson’s is associated with a decrease in the production of dopamine, a chemical that affects the brain’s ability to control movement and coordination.

There is no cure for Parkinson’s. Medical interventions include prescription and over-the-counter medications, brain stimulation surgery and another surgical procedure that allows medications to be delivered directly into the small intestine for better absorption.

But much of what can be done for patients and their families is aimed at staving off the physical symptoms of the disease while maximizing mobility and coordination. While even gentle exercise is considered beneficial, a number of studies have found that “forced exercise” — high-intensity activity that pushes people beyond their comfort levels — may be more effective at delaying the progression of the disease while improving muscle strength, physical coordination and manual dexterity.

Plus, rigorous exercise is known to promote a sense of wellbeing and aid in stress management. Rock Steady’s roots in the boxing ring may add a feisty, psychological dimension as well, though the program adapts traditional sparring moves for a non-contact personal workout.

“I think there’s something about the aggression of boxing that appeals to people,” said Dr. Bill Stamey, a Brunswick neurologist who has referred several Parkinson’s patients to the program. “It’s fun to put those gloves on and punch that bag hard.” Stamey’s patients overwhelmingly report they have made physical gains in the program, including improved strength, mobility, balance and confidence.